Friday, December 31, 2004


I've been on both sides of this conversation, as the kid and as the parent...

kid: I'm full.
parent: OK.
kid: What's for dessert?
parent: I thought you were full.
kid: No, I'm full for dinner, not for dessert.

(Cattle have more than one stomach, but not, to my knowledge, people.)

Thursday, December 30, 2004

My lovely wife

Because someone posted a comment about the appearance of my lovely wife, I must tell you that she looks like a cross between Princess Diana and Farrah Fawcett. I kid you not. If I knew how to do it in Phototshop, I would flip one of these images and morph them for you. My wife also has a little Amelia Earhart thrown in. In her character as well as her looks. Those folks who comment to this blog and who have met her in person can attest to all this. She's a classic beauty and she keeps getting more beautiful with each year. That's not normally supposed to happen with women, but in her case it does. She focuses on her deeds and her character, and rightly considers appearance an unmerited quality. I love her, in a way that surpasses words, for who she is, not how she looks.

And let me tell you another thing about her: She can catch. I don't mean to be sexist, or, more precisely, I don't care if the comment seems that way, but unlike so many women who can't catch, my lovely wife catches like a baseball player, like a basketball player. Toss anything in her direction and one of her long arms (left or right) snakes out and expertly snags it. I often joke with her that I married her because she can catch.

Another advantage is she is almost my exact height, and her feet are the same size as mine. I am wearing a pair of her old running shoes right now.

Wednesday, December 29, 2004


After folding and putting away two baskets of laundry, I went to pick up my riluzole pills and make a small grocery run. In the parking lot of the grocery store, I noted a red late-model Mustang parked off to the side. When I came back out there was a man cursing in Spanish and testing the door of the Mustang, which looked like it had been swiped.

He went over to talk to the man staffing the recycling center, presumably to ask him if he had seen anyone swipe his car. His red car, I noted, as I pulled my white Neon out of the space near the Mustang. My white Neon which still has a red streak on it from when the guy swiped it while it was parked, knocking off the mirror. I pulled out of the lot, carefully keeping the red streak out of sight of the two gentlemen.

Am I the only one who thinks this way?

The rear left turn signal of the Neon is malfunctioning. The bulb still works (I checked), but it doesn't blink. The symptom of this is that the turn signal begins blinking twice as fast as it usually does. That's because one of the blinkers (front or rear) is not taking it's turn, so the one that still works takes two turns in that time. It's probably a behavior that is engineered in as a good way of signaling to the driver that the something is wrong.

Likewise, if one side of your body starts behaving differently from the other side of your body, weak let's say, or slow, then that's a signal that there is something wrong with your brain. We don't know if it's engineered that way, but it does serve as a signal for you to state your love to those you love, make apologies to those you've hurt, wrap up your life, and die happily. Since so many other forms of annihilation come without warning (struck by lighting, run down by ambulance, aneurism, heart attack, bullet) -- it seems unlikely that God is giving you notice. Unless only the evil ones die without warning. And Ronald Reagan is the case which disproves that.

Getting back to the supermarket, I was in the other one near our house a couple of days ago, and I saw some used DVDs for sale. I figured I would buy a couple, watch them, and send them to the troops overseas via

The soldiers sign up to this site and leave messages like this one:

to whom it may concern my name is spc aiello i am in afghanistan. i am repersenting my platoon. we are the cooks for our base camp. We are liveing in a pop up tent with electricity 110 we have been here for about 9 mths now this is the first deployment for half of my section. It is hard on some of us being away from our love ones but we try to stick togther and support each other there are 17 male cooks in my section we do not have a microwave but we do share one tv togther with a dvd player it is hard to get dvds out here and we end up watching the same movie over and over. we do have a laundry serivce now witch is very nice we will appericate any packages that we might get and we thank you from the botton of our hearts. please pray for us

I have sent the troops DVDs before, but never got a letter of thanks for those. I have gotten very generous and detailed letters from some soldiers to whom I sent nothing but a note and maybe a magazine.

I picked up "Master and Commander" for ten bucks, only because someone told me it was good, and I thought the troops might like it. Also, mainly because of its price of only five bucks, I picked up a DVD of a movie with Penelope Cruz. This movie is good, entertaining, and somewhat subtle, while not insulting the intelligence of the viewer. It turns out that the movie was not made in Hollywood, which explains why it's not insultingly stupid. It's called "Sin noticias de Dios," and it's about a pair of angels (one from Heaven, one from Hell), who battle over the soul of a boxer, who has become important due to the economics and politics of the afterlife. Heaven is Paris, and the movie is in French for the scenes there. The scenes on Earth are in Spanish. In Hell the dialog is in English.

It's entertaining and you should watch it, but you'll have to get past the American packaging first. They changed the title to "Don't Tempt Me," with the teaser "Heaven and Hell are on Earth... and they're wearing heels," and providing the wildly misleading summary:

"Heaven has sent its best, and the devil has enlisted his worst - Victoria Abril and Penelope Cruz co-star as agents doing battle for ultimate supremacy. The winner is to be decided by whoever can secure the soul of a short-tempered, punch-drunk boxer on earth. These sexy angels pull no punches, using their brains, wiles and of course, sex appeal. Damnation has never been this seductive, and seduction never more heavenly; he's not going to know what hit him...he's only human!"

Now, as for the actual movie, it's not about a battle for supremacy, but rather, equilibrium. And I don't think either of the angels wears heels on Earth, other than modest, functional ones. Further, Cruz never tries to use sex appeal on the boxer. The blurb makes it sound like two temptresses vie for him. But fortunately the movie is better than that.

Now, those of you who have read my praise of Cate Blanchett may know that I rented several of her movies because I was so fascinated by her. I found another goddess in this movie. No, not Penelope Cruz. She's OK in this film.

But the real shock for me was Fanny Ardant. I included her pictures in this post. She's French. She was born in 1949, which would make her over fifty when this film was made.

And with all due respect to my lovely wife, while my dog jumps up and down and yips for Cate Blanchett, for Fanny Ardant he just goes to the end of his chain and pulls as hard as he can, hoping the tree will fall over before he passes out from lack of oxygen. Ardant is a fantastic specimen of woman, if you like 'em. I'll rent some of her films and let you know how they are.

I'm three days into the 100 mg daily dosage of DHEA and everything seems fine. No additional irritability or anger, that I have noticed. I actually feel more calm. My half-gesture of researching DHEA toxicity on the web has turned up nothing alarming. Apparently there was a study giving men a higher dose than I am taking, and the only effect was lowered risk of heart disease and cancer. I went to the gym today with my lovely wife, for the first time since upping the dosage. Generally -- and it may be a placebo effect, or due to the fact that I just rotated back onto creatine -- but generally I feel just a tad stronger.

Tuesday, December 28, 2004

One cent

My check for one cent came today, from the company that handles billing for my general practitioner (GP). The story behind that is that the GP's staff, nice as they are, don't always bill you for things you owe until months later, and then they ask for payment in person when you go in for a visit, when you've brought only enough for the co-pay for that visit. Or maybe their process is good, but the billing company is messed up. Anyway, this pattern has repeated several times, and most recently I wrote a letter to the GP about it, and wrote my check for one extra cent to the billing company that sends overdue notices as a first step. My thinking was that it costs them more than a cent to process and mail the check for the amount over.

Cheap trick, I know, and we all pay for it, not them.

I stayed home over Thanksgiving because I didn't want to be exposed to recycled germs on the plane ride. So I didn't get to see a couple of the kids in the extended family. They've have come to see us, and predictably, they have coughs. They don't seem raging sick, fortunately, but I have felt the warm draft of air from coughs directly into my face, despite the cover-your-mouth-when-you-cough warning. I don't plan on getting another respiratory function. I took one long nap this afternoon after we got back from a trip to the science museum.

At the science museum there is an exhibit demonstrating ... well, I'd like to say orbital mechanics, but that's probably not accurate ... and the coins fall down the gravity well and go to charity. I rolled a penny in and wished to be cured of ALS.

Monday, December 27, 2004


I feel like such a lazy martyr. In the email groups and web sites that I read (usually don't read), people are exhorting each other to "never give up!" and to fight the good fight. And there are people who have compiled exhaustive, very well researched and well-thought-out websites about their own experience with ALS.

And I've barely read them.

When I started this blog I said something about how I would give myself a graduate-level course in ALS. That hasn't happened yet, and while I do nibble my way slowly down the self-education trail, I also find that I just don't feel like making my own personal story of Lorenzo's Oil. I like to live, to relax, to go to the park with my kids. And sleep. And read stuff that's not about ALS.

Someone said that complacency, or surrender, are not good responses to ALS. Deadly, in fact. But I don't feel I am overly lazy, I just feel that I am lazy to the appropriate degree. I am an extremely energetic person when doing things that make me feel good, and yet I also have a rule not to flog myself into doing things I don't like. It's not that I don't like, or am afraid of ALS research, it's that, right now, I am not so much into it, and I accept that about myself.

I have started today, taking a double dose of DHEA (100 MG instead of 50). It may be an emotional decision (in fact I know it is). It's also lazy that I haven't done any research or even asked my doctor. My thinking is that I am losing muscle mass and I want to gain some of it back in my light workouts. Particularly the neck and chest muscles, which may be still capable of bulking up, unlike, for example, my left hand muscles. DHEA is a hormone precursor that leads ultimately to things like testosterone. I haven't felt any kick from it or the creatine like a normal person would, so I am doubling. I did talk about it with my wife and we agreed to both be on the lookout for increased irritability and anger.

My hair may fall out?

Two friends who I rarely speak with have now informed me that when I talk, I sound like I have just woken up, or that I sound like I am speaking slowly and lazily. I hadn't noticed that. I can, when I try, repeat fast movie dialog or sing song lyrics at a normal pace. I sometimes practice rapid speech, successfuly. But I think that there must simply be a lazy quality to how my syllables form. So what you get is rapid lazy talk.

My son makes a policy of leaving the light on in his room whenever he leaves it. I remember doing that as a kid, and being told not to. To no avail.

Sunday, December 26, 2004

Ear muscles

Did you know you have muscles in your ears? You do! Or at least I do. But not for long! What I hear, and feel, is the tiny jittering of a minute muscle somewhere within my right ear cavity. In ALS, as the nerves die, they begin firing randomly, and to excess. Thus, the twitching muscles in the arms. And ears. Don't believe me? Imagine yourself listening intently for something. Feel that? You are voluntarily moving some aperture inside your ears. It doesn't sound like thunder, thankfully. It sounds like surf very, very far away. Don't bother telling me it's the sound of my circulation due to a plugged ear. You went to eight years of medical school for that? Mostly I experience it as an annoying and disconcerting twitch inside my ear.

I believe I am moving into the bulbar phase, where muscles in the head are effected. In reading night-time stories to my son, I notice my tongue is just a little more lazy.

It is disconcerting that things seem to be moving faster now. I don't want to die in a rush.


I really appreciate and value normal, everyday life. And that's why I never liked booze or other substances, because they made me feel absent, afterwards, as if I had missed out on part of my life. As if I had been dead. I don't have trauma around Christmas like so many other people have, but this year it occurs to me that it is like being dead or stoned for a few days: Normal life disappears and people behave strangely. Then you are left with the aftermath. It looks like 9/11 around here. This morning I caught myself looking forward to the gradual resumption of normal life, of living, the recovery. I found myself regretting the dead zone, and that's when I made the connection between Christmas and drinking.

Saturday, December 25, 2004


My lovely wife and I left the kids with the babysitter last night and went and saw the movie about Kinsey. It's worth seeing. In my view it was not prurient, though it well deserved its "R" rating. I saw it as a movie about the intersection of social politics and science.

Friday, December 24, 2004

Uncontrollable, inappropriate laughing

People with ALS often suffer from fits of uncontrollable, inappropriate laughing or crying. In my case it's usually laughter, not crying. Unless you count the crying about not being able to run, which I consider appropriate grief. The laughing or grinning usually happens to me when someone is telling me something serious, that I take seriously, and about which I wouldn't want to laugh. I have developed a hand-signal to show my wife, so she will know I am not actually laughing at her. Today, at lunch, was a doozy. I had a wee bit of chicken pot pie in my mouth, and some orange juice waiting in the cup (getting right back on the horse), and she started saying how disappointed she was that the gingerbread cookies had baked too long, and would have to be redone.

I kept laughing and giggling like a mental patient for it must have been five minutes. I think part of the reason was the food in my mouth, and my not wanting to choke again. And then it course it becomes funny that you are trying not to laugh.

I gave her the hand sign. She's never gotten upset when this happens.

Female logic

Some years ago before I was married, my buddy was complaining to me and another pal about his girlfriend insisting that he hang on to a birthday card she had gotten him. To the male mind, birthday cards and seasonal cards are nice things, but we notice the female tendency to preserve these things, and we contemplate that if you are forced to keep them forever in order to show how you cherish the giver, then you wind up with a filing cabinet full of cards. Impractical.

However, years later I learned that there is a logic to it, a systemic algorithm guys would like. The way it goes is this: You keep all the cards from the event (birthday, Valentines Day, whatever) on the mantle until the next carding holiday. Then you throw out the old ones. Well, you don't throw them out so much as tidy them up by putting them in the trash, which little sad bit is overwashed by your happy bustling in putting the new ones out.

So many things to worry about in this life, but thanks to my appreciation of female logic, I no longer worry about card litter.

Yesterday, walking home from the gym, a squirrel thought it was safely out of my reach, sitting there on the telephone pole, facing away from me. But with a deft move I reached up and touched the dangling tip of its furry tail. The hair was bushy and stiff.

Thursday, December 23, 2004

Cup return vow

Hayzoo! People with ALS often have trouble swallowing liquids, and I just now practically stopped breathing at dinner when I choked on some orange juice going down the wrong way. My daughter was sitting on my lap and my son was misbehaving, and she was laughing at his antics with her delighted laugh. It's hard for me to stay stern with him, I usually smile or laugh. So I was trying to control my laugh and not spit or drool the orange juice all over my daughter. Both hands were occupied, one holding her and the other holding something, maybe a fork. I decided to force a swallow so that I wouldn't spew all over everything. I think some of it went down into my airway, maybe a lot. Because I was choking and gasping sort of spastically, trying to get control of my breathing. I was unable to breathe. The kids were alarmed and my son, the hero, hopped over and said he would get his mom. She was upstairs taking one of the rare bathroom breaks that moms seldom get but so appreciate. By the time she came downstairs I had set my daughter on her feet, wiped up the spilled juice that, through my tears, I saw she was about to touch, and was hacking in the sink. Then I retreated behind a closed door, turned my torso the other way so that it would drain the juice down from my lungs. Then I got positional vertigo and had to reverse. I had several very deep, orange-flavored burps, and a little hacking while I heard my son imitating my choking, and I wrote this entry. Now, to go out there and finish dinner.

Oh yeah, my vow: If ever I am stuck with liquid in my mouth when I feel a laugh or sneeze or other event coming on, I will just return the liquid to the cup, and not try to swallow it. This is my vow.

Merciful capitalism

On the long-term disability front, my application was approved. This should mean that the financial situation remains stable. I was fortunate to be working as a computer programmer for a company that had good benefits. The state short-term disability benefit checks appear be swindling down to nothing. I'll have to check on that. The private company that provides the long-term disability checks does so with the understanding that whatever other benefits you get will be subtracted from what they have to pay you. So for example if they guarantee you $100 a month, but you are getting $20 from the state, they will only give you $80. They also require that you apply for Social Security benefits, in order to continue the subtraction process, and if you fail to apply for Social security benefits, they will subtract from you what you would have gotten. I have completed the parts of the application that I can online, but there are some additional forms I have to send in, and I am being slothful about that.

The motivation of the LTD benefit provider is understandably to provide as little as possible for the least time possible. This is America, and they are a for-profit enterprise. They sent me a very nice letter that they will continue my life insurance policy without requiring me to pay a premium, until I turn 65 or am no longer prevented from doing any work by my disability. At which point they get to drop me. The LTD policy itself is finite in duration: They wrote me that they provide benefits for two years and then assess whether I am still prevented from doing work by my disability. What I think that means is that, two years from now, they assess me and (if I am still walking and able to move my arms), they declare me fit to flip burgers at a fast-food place, and deduct from my benefits whatever I would earn from doing that. Or, better for them, they declare me fit to do a high-paying job, and stop paying me altogether. And I'll bet that the life insurance policy then goes way because my hypothetical "new employer" will pick it up. And no, I'll bet they don't let me pay the premium, because (reasoning backward from objectives and keeping in mind that that is America) the law will work in such a way as to forbid them from canceling the life insurance policy of a dying man, but enable them to craft a set of circumstances to hand his policy off to thin air. At that point, if I still want benefits and life insurance, I'd be forced to get lawyers going to prove that I am not fit to load 16 tons.

Am I a pessimist? No, just experienced.

Doc re Lyme

I think my lovely wife and I have decided that we will see a specialist in Lyme disease. From my brief readings on Lyme disease (thank you, Scott!) it seems that a long course of antibiotics, possibly delivered intravenously, is the treatment. My neurologist is not trying to discourage me:

"If I were in your place, logical or not, a course of strong antibiotics wouldn't hurt, might help."

My son and I went shopping today at the hardware store to buy banister poles and mounting brackets for the stairs in our house. I may need these as I get more awkward.

So I'll be installing something for myself to use when I'm no longer capable of installing stuff. The dissonance is piquant.

My lovely wife and I are also looking into the possibility of having an addition built by a contractor who specializes in 'universal design' for the handicapped.

My son also helped me pick out a plastic bin to replace the one I threw out in the course of recent sheer-wall work. I used the lid last year to spare my back when bring in the living Christmas tree we keep in a pot in the yard. Today my son and I used the new lid to bring in the tree. I am not a Christian, but I was raised with this holiday. I would be happy to avoid it altogether, and years ago made a treaty with all my family and friends. The treaty posits that shopping is a bore and a burden, and stipulates that if you agree to ignore me on my birthday and Christmas, I promise to do the same for you. It worked well and still does.

Then I got married and we had kids, and kids expect presents around this time of year, so we do a mild Christmas for them.


Wednesday, December 22, 2004


I don't like the feeling that my breathing has become more shallow (due to nerve and muscle loss to the breathing muscles), but that is the sense I get. I have found myself catching up on breath after very light efforts such as climbing a couple of flights of stairs, or loading the laundry into the machine. My self-measured inhale volume is still down to 4250-4500 mL despite this long stretch of no respiratory infections, and despite breathing exercises I have been doing. I need some exercises that will strengthen the neck muscles. My doc says the muscles that allow us to hold up our heads are the same that enable us to breathe. He also notes that genuine breathing impairment is indistinguishable from anxiety. There's no way I can prove I'm not anxious, but I sure don't feel that I am.

My experience with ALS had been that the problem arrived in my extremities, and I thought it would progress from there; Sicily, Naples, Anzio. But now there's been a landing in Normandy. I like to think it's a feint. I'll hold the panzers in reserve, ja?

Tuesday, December 21, 2004

Gimme Lyme!

How would you like to have Lyme disease? You know, the mysterious, crippling, tick-borne spirochete? I would be thrilled! And I'll tell you why: Because it would represent a possible ray of hope in my battle with ALS. Maybe I don't have ALS, maybe I just have Lyme disease. Maybe I have ALS, but the Lyme disease is making it worse. That's why I was thrilled to pick up the results of my recent blood work and see that my results for Lyme disease are still as mixed now as they were a year ago. I sent this email to my neurologist and will let you know his response:

My latest blood work results come back positive for Lyme, again.

The results reported 12/18/04 (which the GP has) were:

--Lyme disease for kD 18,23,28,30,39,45,58,66, and 93 IGG nonreactive


--Lyme disease 41 kD IGG reactive

Recall that the results from circa January 9, 2004 were:

---IGG factor: 0.2, with 0.8 or lower listed as "not detected."
---IGM 0.9, with 0.8 to 1.2 listed as "indeterminate" (0.8 would be "negative", and > 1.2 "positive")

I do not know the difference in the units and testing methods for the two result sets, then and now, but I do see a trend of nonnegative results. My questions to you are:

1) Is it possible that I had, or have, Lyme disease?
2) How closely might Lyme mimic ALS ... assuming, for discussion, that my response to Lyme was atypical?
3) Should I be treated for Lyme, and what does that involve?

In other news, my cholesterol picture has improved, only because they moved the goal posts. A year ago my ratio of LDL+VLDL ("good cholesterol") to HDL ("bad cholesterol") was 3.65. Now that I have spent a year eating only one egg a day, my level of HDL is almost the same, but ironically the LDL and VLDL have both come down. So my ratio of good to bad is currently 2.98. But they have changed the definition of what "normal" is to allow for a worse picture. And while I am not yet normal, I seem to be looking better. Also on the cardiac-risk-factor front, the triglycerides are well within normal limits, and that's good. They came down from 250 a year ago to 104 now. I keep this data at the bottom of the metrics page.

Here are images of my latest Lyme results from IgeneX:


Monday, December 20, 2004

Hero of the climbing structure

I went to the park with my daughter yesterday. She immediately started climbing up this chain-and-bar lattice that leads up to a platform about the height of my eyes. It looks like that climbing net they hang over the side of a ship. I had never seen her do this before, and she went all the way to the top and stood triumphantly on the platform. Then she climbed down all by herself too.

She went up and down in the same way three more times or so. Then she climbed up to near the top and let go and leaned back. Naturally she did this when I was glancing the other way. When I reacted, she was already falling backward. She was going down head first when my right hand closed around her ankle. She didn't bang her head or bash against anything.

I set her down and she was crying in alarm. I picked her up and started rocking and soothing her, but that didn't last long; she wanted to be set down. As soon as I set her down she climbed back up to the top, and back down again. She is like her brother that way -- wants to get back on the horse.

Then I asked her to stand to one side while I gave her a lecture about always holding on and never letting go. I climbed on the lattice and demonstrated letting go, then fell on my back a little harder than I should have. Maybe not the best thing to do when you have ALS. But she listened well and seemed to understand. Then she went up and down a couple of more times. And we went off to the sandbox.

Sunday, December 19, 2004

Mom & Me Too

There is a blogger I have been following, someone who takes care of her 87-year-old mother. She is linked off to the right as "gail." In this post her writing about the caregiving is as real as it gets. All I can say is, "Wow!"

Elsewhere on the web, I encountered this: "But if you haven't accepted Christ into your life yet I can guarantee that you will spend eternity in hell." Okay, that's the kind of compassionate God I wish to worship. Sign me up! Though not, of course, out of fear.

In another unrelated thought, I notice that most people who blog about their breakups are the ones who got left. Presumably the ones who did the leaving don't bother to blog about hurting someone. Or, more sobering, perhaps blogging is a sign of a sensitive, introspective person whom serious 'playas' tend to dump?

Here is my mental map of blog theme groups:

My life is so boring.
Japanese animation site.
Sorry, your browser is not win32 compatible.
My boyfriend is the best.
Jesus is SOOO cool!!!
Anal youngest teen girls anal!!!
Real estate law real estate.
Injury accident injury.
After fifth period history I hung out with JJ and Tom.
She crushed my spirit when she left me.
The looney liberals want to destroy this Christian country and I'll explain how.
Poco a poco se va lejos.
Somos amigas siempre.
Lincoln destroyed this country and I'll explain how.
I am a stay-at-home mom with two kids who thankfully are napping now. Oh shit.
I hate my parents.
Weight loss weight-loss lose weight pounds.
I'll be going to state college next year to confront the liberals.
Young, out, and queer in NYC -- got a problem with that?
No hay problemas cuando tienes Jesus.
In my quest for meaning, I'll wander from Plato to Socrates and all points in between.
My blog about web design, with a little FORTRAN thrown in.
After church we're going to play ping pong.
Office supplies supplier order office.
My latest photos.
Credit repair fresh start repair credit fix.
Recipes from Kate.
We all loved mom very much.
Reality-based in a red state.
Sorry, your browser is not win32 compatible.

Saturday, December 18, 2004

Earth's city lights seen from space

A couple of folks have asked me to post some poetry here, and I was thinking of putting up one of my existing ones, but didn't like that idea. So I decided to write a haiku from scratch, right now, in these five minutes or so. Pleased by advised that it may stink:

cities seen from space
show consumption, not a
candle for each death
Recently I wrote about a woman who emailed me, who was going in for an MRI due to strange symptoms. She had the MRI was told that everything is normal. She wrote me:

I got my results and it was normal. I broke down and cried when they told me. And you know, coming and telling you this is so hard. I know that you'll be happy and you wouldn't want anyone else to go through what you are going through, but yet I feel guilty for being OK and you aren't.

I understand the feeling, because I sometimes had similar thoughts before I was diagnosed, when people were showing so much concern for me. There is something tender and loveable about humanity that we would feel guilty not to have a fatal affliction.


Friday, December 17, 2004

It's official

I went to the gym today, again, having gone four days ago as well. I want to continue going on a regular basis. Some of my muscles still remembered the super-light workout from four days ago (I hesitate to call them 'sore' -- my muscle perception has changed as a result of ALS).

On the way there I jogged for a few blocks, and I must say that it is now official, my jogging is not normal or anything close to it. How odd to think that around the time I began this blog, I went running with my wife, and we ran at a good pace, and once I think she asked me to slow down.

No more. That may have been the last time I had a normal run with my wife. She might jog with me again, but I would simply be unable to keep up on a real run, even a light run.

Details: The left leg is so slow and stiff that the right leg easily outpaces it. I try to slow the right leg down to match the small steps of the left leg. If you saw me jogging, you would definitely perceive me as disabled.

How odd. You know, my lungs and the rest of the body feel strong and fine. I'm sure my cardiopulmonary system is capable of a five-mile run. But my left leg just isn't.

I just realized that today, December 17, is one year since I noticed the symptom that caused me to call the chiropractor, who told me, right away on the phone, to see a neurologist. The problem was that I couldn't imitate the jumping game my son was playing.

One of the differences I noticed back then was that while I could still kick myself in the butt forcefully with the heel of the right leg, the left leg lacked force. I have tried it again today and the left leg can't to it at all (it gets to 90 degrees), and the right leg can still do it, but in the weak way that the left leg did a year ago.

One doesn't usually have photos of their left thumb, especially if you are a person who, like me, rarely appears in photos. But I happen to have two shots that feature my left thumb, one from Christmas 2002, and one from May 2003. When I look at the hand, I don't see that 'skeleton-hand' gap that I now have. I'll send the photo to my neurologist for his opinion. The cramps and twitches in the left forearm did not start until Spring of 2003. I wonder when the motor neurons start dying, and I wonder when it shows up as a skeleton hand.


Thursday, December 16, 2004


When we were getting out of the car to see the neurologist this morning, a CD fell out of the pouch. I had always wanted to get my MRI films in CD. It's really great. And the pictures (such as this one) are so much sharper than the fuzzy ones I took with my digital camera. (Even though it was resting on a chair). I think the issue there is that I have dropped it so many times. Maybe time to get a new one? I can even make a Quicktime movie and drill through my head over and over and over again.

Today I found out again that certain people love me, and still others who don't know me, do care. Thanks, everybody.

The neurologist shared with us the impressions report that the radiologist doing my MRI had. This was not the same person who requested the study; she is on vacation at the moment. Basically they say that the unusual brightness they saw on the first MRI is less bright now.

Hyperintense signal in the posterior aspect of the internal capsules bilaterally right greater than left, extending inferiorly to the level of the cerebral peduncles and superiorly to the cortex and the parietal centrum semiovale. The pattern of distribution is identical to the previous examination, however, the findings are more subtle in signal characteristics than on the previous examination.

I never knew I had peduncles. I wonder if women have them?

Back when I had a bright signal they said it didn't mean anything bad. And now that the signal is less bright they say it doesn't mean anything good. Bright, or not bright, why should I care? But they want me to feel encouraged.

I may have messed up by declining the contrast agent. I did so because, after the first MRI, I was told that the contrast agent had not made any difference in the scan results. Predictably, though, it turns out that they do additional scans from a certain angle when using the contrast agent. And this time they did not do those scans, which my neurologist and the radiologist writing the paper want to compare to last year's scans. I'm willing to go in for another MRI if she asks for it, since I was able to tolerate the procedure pretty well this most recent time.

The neurologist remarked again how the brightness shown in my brain (which I take to be the meteoric twinkle of motor neurons dying) follows the motor pathway exactly.

I offer the second photograph in this post because I believe it shows the white stuff in those two narrow streaks towards the center of the brain. The more intense white stuff all around the perimeter of the brain is presumably completely normal and healthy. Whatever. I didn't ask. They would have told me.

I believe that this scan is one that shows that the effect is greater on my right than on my left. Keep in mind that the scan is displayed from the perspective of the feet, looking up to the top of the skull. So apparent right and left are reversed. The scan shows more damage on the right side of my brain, hence the left side of my body (controlled by the right side of my brain) is more messed up. Thing is, though, in most people with ALS, the scan does not show any special signal along the motor pathway. So the whole thing seems pointless to me. But then, great science usually comes from studying things thought not to matter.

Oh, by the way, I have decided to stop taking ginseng because, very roughly speaking, the period of my latest stepwise decline coincides with my adding ginseng back into my pill regimen.

The neurologist had a puppy in the office that day. We played with it.

The good news is, I still don't have brain cancer!


I had my blood drawn for tests yesterday morning. My lovely wife is going to come with me today to meet my local neurologist, the cool guy, because although I have praised him so much, she has never met him in person. I'll bring the films from the MRI. The doc and I have exchanged friendly informal emails and we are planning to have him and his girlfriend over to our house socially at some point.

Yesterday I watched a video about a guy who died of ALS. My left thumb has been twitching for several days now. With the infringement on my speech that I noted in the recent post, but also just with a vague general sense that I get of my symptoms progressing, I have been more acutely conscious of my own near mortality. As I plateau out, I may get a sense of durability again. But as of now I feel like I am going to decline and die rather rapidly. It's just a feeling, I know, but that's the feeling. I hate the decline part more than the part about being dead. The humorless, cruel progression. And now we'll take a little bit of this, and tomorrow a little bit of that... Don't worry brainhell, we'll have you in a wheelchair in no time, and on the ventilator.

Well wrong. Because at this point in time I'm going to make up a written scenario list for my wife to follow, and if she has to make the decision on whether to put me on a ventilator or let me die, the list will say no vent. That may change over time, but I know from my reading that I am not alone among ALS patients in making that decision. The majority of them say no to it.

I woke up this morning thinking about how I and my buddy from work used to run in the hills. The golden grass, the dry powdered dirt of the trail. The hot sun, the cool air. Wild oak. We ran like horses, we ran like dogs, like deer. Sure it was work, and sometimes your body slowed down, but you could always count on it to reassert itself and carry you. Our legs were strong. Our lungs and backs were strong. And not one of you damned people reading this blog could have kept up with us. None of you! And now he can still run and I can't. He's getting stronger all the time. It's not that I'm not worthy. It's not that I didn't work hard enough. It's not that I don't enjoy it. It's because something has been stolen from me. Stolen. I'm only 41. The losses of old age I could handle. But I am so damned healthy, and this ALS is pure crap. I used to run like a dog in the hills and now this has been stolen from me and I am so pissed off. So pissed off and I couldn't see the keys on the keyboard during most of this.

One time when we went for a run, we brought our cameras. I took over 100 photos of those hills from that run. Back then it was just a lark, but I am so glad now that I took those shots. I grieve for those runs, and the photos help me with that. One of them is shown in the photo included in this post.

Just one steady reliable footfall after another. Like riding a horse. If you're not a runner you may not know what that means. I miss it so much. I want to run. I want my legs to carry me. Like machines. Like the machines they were.

Wednesday, December 15, 2004


The proof copy of the poetry collection is here and it is the correct size and it looks fantastic. But I note some formatting issues that need to be addressed. So I'll spin it through the process one more time.

Picking up my son from preschool, his pal said to him "Your dad has old hands." I asked me him what meant, but he was embarrassed and clammed up. I am older than this kid's dad, and skinnier. And my right hand was towards him. But he may have seen my left hand, which is well on it's way to the 'skeleton hand' effect seen in ALS patients. That's where the muscle between the thumb and the finger atrophies, and you see a depression there. He may have caught a glimpse of that.

But my kids are used to me, and since my changes are gradual, they'll see me as normal.

I want to linger on this planet until they are at least teenagers, so that they don't experience any fear or disruption from my condition.

Tuesday, December 14, 2004

Crater Lake

I tried to say "Get your Crater Lake hat" and my tongue did not handle the transition from the R sound to the L sound well. It slurred. I tried it on the sly several more times, and the same thing happened. I can say it clearly if I speak s-l-o-w-l-y. This is not the only example, I have noticed my tongue get thick amid other verbal gymnastics.

I am really upset that my tongue is not responding properly and my speech is clumsier. I was not expecting this yet. I expected to rot from the extremities inward. I expected that even if I were in a wheelchair, still I could talk. Taking my voice away, when I have small children around, is the most cruel blow. I know it's not gone yet, but now it has been encroached on. I'm furious.

It may be that I'll go into another long plateau and my speech will be fine for a long time. I feel that my limbs have had two long plateaus since diagnosis, and for example the left legs seems unchanged. I even think of it as the reliable one, despite it being slow and weak, because it is so steady. Maybe the new wobble in my walk is from the problems moving into my hips. I don't know, but the legs seem the same.

Being a daddy in a wheelchair was one thing I was prepared to accept, but being a daddy who can't talk is awful. I love my kids so much. My daughter is about to turn two, and when she gets taken out of her crib she likes being wrapped in blankets, what she calls a "bunny hole." She lay on the bed with us this morning. I spoke to her. She spoke to me. I want to talk with her. I want to talk with my kids. Please don't take my power of speech away!

I also have this impression that my breathing has taken a step backward. I don't find myself out of breath, but I find myself breathing very shallowly. And my self-measured inhale volume is still only back to 4500 mL, whereas as few months ago it was at 5100.

Today I heard from a young woman, the mother of twins, who has some strange symptoms and will be going in for her first MRI tomorrow. It happened by chance that while I was skipping from blog to blog, I encountered her test post, just a stub that said test. I must have posted a comment like "You are go at throttle up." She got curious about my moniker, since she is going through some brain hell herself. She emailed me that she has been reading the blog and finds it "both terrifying and comforting."

I'll say. I encouraged her to blog her own experience, and if she emails me with the results of the MRI, I'll let you know.

This week my lovely wife and I rented and watched "Pieces of April", and we also rented, and I watched, "The Battle of Algiers," made in 1966 but basically about Iraq. They're both well worth watching.

Monday, December 13, 2004

Hero of the swings

I think that I notice minor speech defects creeping into my elocution. It's a lot like my walking. If I pay attention, I can walk like other folks, but if I lurch gracelessly from point point A to point B, I often wobble a bit. Now and then I notice minor slurring from a lazy tongue. So I am going to press ahead with making those .WAV files for use by a speech device I may use in the future.

Speech problems typify bulbar onset ALS, and bulbar onset ALS is supposed to be scary because it is faster. Well, my case so far has proven to be slow. And I wouldn't be at all surprised if it presented itself in an atypical way that defied expectations. I also realize that this could be the opening of the abyss. We Shall See.

I walked to the playground today with my son. He was swinging in high arcs in the swing to my left, and I was just sitting down in a swing and getting ready to push off, when a small toddler boy walked right in front of my son's path. For half a second my brain did not compute any alarm, and then I realized what was happening. Pushing with my my right leg, I shot down beside my son to land on my left knee. My right arm flew out and arrested the swing of my son, just as the mother screamed her son's name. It was not that hard to stop my son's forward progress, but my body tried to maintain its balance after the impact, and I reeled around and fell on my back. No one was hurt.

I have often over the years longed for a moment to demonstrate my heroism. There was that time I tried to rescue the woman from the purse snatching in progress, only to find my pants legs caught between the chain and gears of my bike.

This, I suppose, will have to do. And if I protected a toddler from harm, it will serve quite well.


Sunday, December 12, 2004

Metaphor for Iraq

Doctors were preparing to cut off Battle's ring to save as much of his finger as they could.

"But that would mean destroying my wedding ring," he said.

...With his approval, doctors severed his finger, but somehow in the chaos that followed, they lost his ring.

If the ring symbolizes the vow we have taken for Iraq, then the finger symbolizes all the troops and Iraqis who are maimed and killed to uphold that vow.

How symbolic that both the finger AND the ring were lost in the chaos.

And, lest a lesson be learned, predictably:

"We need to make more David Battles," said Daniel Pierce, the school's assistant head coach. "He is one amazing guy."

Saturday, December 11, 2004

A bed full of cats

This morning I made breakfast for the family, unloaded the dishwasher, loaded it up again, sorted and put away three baskets of laundry, stripped and made my son's bed, and will put the wet bedclothes in the washer in a few moments. In the course of this, my son read to me, perfectly, from a book called "A bed full of cats." I see now that it's a level 2 book, scaled for grades one through two. That confirms my guess, which was that he reads better now than I did in the second grade. He's about to turn five, but technically he's still four years old. He reads stories to the other kids in his preschool. Here's a typical paragraph from the book:

Lee didn't hear anything about Flora. No one found Flora, and she didn't come home. Days and weeks went by.

He also reads Amelia Bedelia quite well, and that looks like 4th-grade level to me. You might think I'm bragging, and while it is true that I am impressed, and pleased, I realize that most bright kids will wind up being good readers whether or not they are advanced readers at four. The test of life is not who starts reading first (fleeting glory), but rather, how kind and how happy we are.

Friday, December 10, 2004


So I went to the lab this morning to have my blood drawn. This is the lab where, some months ago, they did something incompetent or mean (I don't recall what), and I decided to drive across town to the other lab instead of dealing with them. There were 10 elderly people already signed up this morning. We sat around and waited. I read the paper. There was a large woman, a staff member, moving slowly around the lab. I got up and approached the desk, to figure out why we were waiting. A patient was sitting in the special chair, peacefully. The woman asked me "Did you sign up?" "Yes," I said, then added: "I was just wondering what the -- are we waiting for the phlebotomist or something?" I didn't want to say "What is the delay?" because that might be offensive. So I tossed in that quick guess. The woman walked behind me, and as she did so, she said "Hello?" in that ironic voice. I got that she meant that she is the phlebotomist, and that her pride was hurt, thinking that I would assume her not to be. I stood there for a moment, not yet aware that I should take offense. Then I remembered that my response to being treated this way, in any customer service situation, is to go elsewhere. I have worked behind the counter many times in my life and I never treated my customers that way. So I crossed my name off the waiting list and wrote "Hello" next to it, in quotes. Then I said to the woman, "Bye." She crooned back "Bye." As I pull out of the parking lot I realized, further, that I don't want someone taking my blood who is annoyed with me. Not only because of the jabbing they could inflict, but because of the negligence with which they might handle my sample. I'll go to the lab across town. Their phone number is disconnected.

I also try to make a habit, in these situations, of filing a complaint, for the benefit of subsequent customers. It is, though, a lot of work. And the employee is well able to blow it off as an encounter with a crank. But hopefully I am not the only one making the observation, and after a number of incidents, something might be done. Might.

Then while I was standing in the kitchen eating breakfast (note: standing), and listening to NPR, they started into a story about people in the US going to China for controversial medical procedures. They featured the story of this one guy who wasn't moving much, and I thought maybe he might have some disease similar to ALS. The reporter doing the story had an accent I am not familiar with, so when he started to say the name of the guy's disease I didn't recognize the word, and it was only when he said "lateral sclerosis" and "ALS" that I was sure. I laughed. This poor guy from the US had nasal cells from aborted fetuses transplanted into his brain. Totally useless! I was amused to hear such a long story about ALS on the radio, and found it ironic. My lovely wife had taken the kids with her to her appointment with the chiropractor. Some people think chiropractic is quackery. I know from personal experience that it isn't. But you can keep your aborted-fetus nasal cells.

Thursday, December 09, 2004

MRI de gusto

This time the MRI went well. In addition to claustrophobia, I have positional vertigo. Mostly when I am flat on my back, in the position required by the MRI.

However, I prepped myself by lying underneath the magazine table in the waiting room. I had vertigo, but managed to adjust to the position by the time my turn came.

I told the nice young man with red hair and an Australian accent that I had anxiety, claustrophobia and positional vertigo. I lay down on the positioning table and explained to him that it works best for me if I tell them when to put me in. He agreed. There was some discussion of me taking a valium but they require you to have someone to drive you home after that.

I put in the earplugs. He put the plastic positioning visor on. This is an open lattice of plastic that encircles your head. There is a little mirror inside so that you can see out along your legs, through the MRI tube aperture, and talk to people in the room. Using this mirror, you can also see through the big wide window and observe the people in the other room who operate the computers.

I had some anxiety. I was a hair away from telling them to call it off and rescheduling for a time when I could bring a driver and have the valium. But then I thought, I could always ask them to bring me out, if I started to panic in the tube. So I told them to send me in, and kept my eyes closed 98 percent of the time in there.

Once inside, it was easy. I imagined that I was napping in bed at home, and listening to road work being done outside the house. The machine is quite loud and rhythmic, as I imagine a German disco might sound when playing industrial or techno music.

It seemed funny, but I managed not to laugh.

It was over sooner than I thought it would be, and they gave me my films and I came home. I'll show the films to the local neurologist when he checks me out on Thursday the 16th. He'll send his report on my symptoms to the radiologist who asked for this MRI for her research paper.

And I will have them for the ALS clinic when I go in February. Which reminds me, I need to go pick up that paperwork from the GP's office, authorizing the blood work. I have to fast 10 hours before having my blood drawn, so I plan to have the blood drawn first thing in the morning, before breakfast. Maybe tomorrow.

Wednesday, December 08, 2004

MRI tomorrow

Okay, it's set: I will have an MRI tomorrow at 11:45 AM. You may recall that I have claustrophobia and I don't like being inside that tubular coffin. But I was able to handle it on two occasions previously. One of the doctors who works in the MRI facility requested this follow-up MRI so that she could write a research paper about my case. The FLAIR signal being so bright was what interested her. She's the one who first suggested to my neurologist that I might have ALS. So I guess I am returning the favor. But I am also interested to see what is going on inside my brain now. Is that signal still bright? Is there a giant hole in my brain? Etc., etc.

She requested this MRI back in June. But I have had a wracking cough for so long that I could never schedule the MRI. You're not supposed to jiggle inside that machine. And besides, I wouldn't want to go in anyway, unless I was feeling tops. I feel pretty good right now.

This is also part of my one-year diagnosis festival. I am getting blood work done again, getting the MRI, and will go back to the specialty clinic that confirmed my diagnosis back on Jan. 28, for what, in my mind, will be a one-year checkup. However, the actual visit will be Valentines Day, Feb. 14.

When the doctor confirmed my diagnosis, I was of course asking him about prognosis, and he said

Then the next most rosy scenario is that this goes very slowly, and a year from now we're sitting looking at each other and the differences are very modest. Little more trouble with the hand, little more trouble with the leg. A year later we're getting together, and it's still only in the left arm and leg and we're still looking at a only a little but of worsening. And I have seen that. So, that's -- worsening over time -- but very, very slowly. So that would be second-best rosy scenario.

Basically, I am looking forward to sitting across from someone at that clinic and being told that I am only having "a little more trouble" with the hand and leg. Actually, it may sound silly, but I want to sit in the exact part of the exam room that I sat in last time while I got the diagnosis confirmation. The image of "we're sitting looking at each other and the differences are very modest" needs to be fulfilled. So I'll be sitting, probably talking to a doctor or nurse, but not the same one, and there will be a moment when I say to myself that this is the moment of sitting!

And then I'll get up. And walk. That is no small blessing for someone with ALS. The other week, I walked to the store, and it was sunny and brisk, and little white clouds curled in the sky, and I looked up, and I was just so thankful for every step. I'm walking! I'm walking!

Tuesday, December 07, 2004

Light on

There are some things my kids do that I remember doing. I remember when I used to sing "Row, row, row your boat" in my own way, and my parents would try to teach me the right way. My daughter does that now. I remember when it made me feel good to turn on the light in my room and then leave the room, as a way of starting the day. My son does that now.

We have an online parents' group for my son's preschool, and when I joined it, I let the other parents know about my ALS, and thanked them for any measures they were taking to keep sick kids home, since I'd had to much bronchitis. I also said that with both parents working, it's often not possible to keep sick kids home, and that I knew they were already doing the best they could.

One mom responded by email saying my message was very brave, and offering her support. Another called and said she would do anything we needed, including watching kids. The other day she watched our kids while we went to the parent-teacher conference, and then we watched hers while she did the same. Then we all had dinner together. What a madhouse, but it was fun.

This morning I pushed my son to preschool as usual, using the jogger stroller, and thought about how this is a good practice. I had made a point of taking walks while they were away over Thanksgiving, and benefitted from it.

On the way back, this car arrived at an intersection at the same time I did, and I angled to cross behind it as I usually do. But rather than proceeding to the stop sign it stayed there in my way, which I found annoying. I increased my angle, and began to mutter "Get out of my way!" I noticed that the driver's window was open, despite the cold morning, and wished I hadn't begun muttering out aloud, since the driver might hear me. I didn't so much mind that they might be offended, as that I would have been offensive without intending it.

Then I recognized the driver, one of the dads, who I had seen only minutes before at the preschool. He was the husband of the woman who'd emailed that I was brave.

"We saw your message to the group," he said. "That was very brave."

I was smiling now, and said thank you.

"We think about you a lot," he said. "We think of you."

"Thank you," I said, flapping my arm and releasing a cloud of vapor from my mouth. "So far I'm doing well!" I sounded cheerful.

"Yeah," he said. "Good." He smiled and returned his attention to the road. I said "Bye Will!" Will is his son's name.

"Tom!" he said.

"I mean, bye Tom!"

I continued to the other curb, wondering if my gait betrayed that odd, hip-centric motion that I feel so mildly, and that disabled people often exhibit.

It occurred to me that Tom and his wife might think my message "brave" because they wouldn't know that I'd already told many people about my ALS, wouldn't know that I drooled about it almost daily in this blog. They might think it was the first time I'd revealed it to a group of people I didn't know all that well.

Monday, December 06, 2004


Quick note because I am in charge of making cooking while my lovely wife goes to the chiropractor with back spasms. A friend has had her third baby, and my wife was going to cook her special chicken broccoli and deliver it to their house.

Through Barnes & noble you can buy used books from independent bookstores, and due to the hype around Kinsey these days, I have ordered both of his famous studies. The one that came today, as the rain started, is "Sexual Behavior in the Human Female." I know very little about these works. But I did flip open the book at random and encountered a data table listing "thigh pressure" and pressure on something else I'm not mentioning in this blog. The bookstore is in New York. How long will it be, before the theocracy running this country makes such books unobtainable? It could be as soon as 15 years, I think.

Time to make dinner.

OK, I got it into the oven. Phew! We're having the same thing tonight.

Sunday, December 05, 2004


My lovely wife sent me this article and my eyes bugged out of my head. This has the potential to make life much, much better even for people totally paralyzed by ALS. However there is one catch, about which I have emailed the author of the article:

I read your article on Matthew Nagle in the S.F. Chronicle. One thing your article did not make clear to me was whether the implant only works with motor neurons. Since ALS involves the death of all motor neurons, it would seem to render the implant useless for someone with ALS.

We'll see if he responds. I also emailed my local neurologist.

Here's some of the article. I didn't copy all of it, and the link back to the S.F, Chronicle no longer works:

    In June, surgeons implanted a sensor under the skull and directly into the brain of a 25-year-old Rhode Island paraplegic named Matthew Nagle. That allowed him to control a computer and other machines using pure thought.

    Plugged into a computer with a fiber-optic cable attached to a node on his skull, Nagle can operate a computer by thinking. Not long ago, researchers also hooked up his brain to a prosthetic arm. With practice, he was able to open and close the artificial hand. "Not bad, man, not bad," he said.

    When he moved the arms up and down, he said: "Holy s -- !"

    With that, the age of neuro-cybernetics began -- that is, the science of using machines to carry out commands of the human brain to move parts of the body.

    Nagle is a long way from rising up out of his wheelchair, but he is responding so well to this new world at the edge of science that researchers don't rule out the possibility that he may one day walk using mechanical legs controlled by thought.

    Three years ago, the former high school football star was stabbed in the neck during a brawl at Wessagussett Beach in Weymouth, Mass. The 8-inch blade severed his spine, leaving him paralyzed and on a respirator.

    Nagle was destined to live his life unable to move from the neck down until he was chosen to be the cybernetic equivalent of Neil Armstrong walking on the moon.

    The implant, called the Braingate Neural Interface System, was conceived by John Donoghue, head of Brown University's neuroscience department. He co- founded Cyberkinetics Neurotechnology Systems of Foxboro, Mass., which is making and testing the device.

    Other researchers around the country are working on similar devices, and some have already implanted much simpler electrode devices into the brains of two patients. But Cyberkinetics is the first to receive FDA approval for human testing using an array of electrodes on as many as five severely disabled patients.

    Donoghue developed the technology from work he began in the 1980s studying how the brain translates thought into action, which involves trying to figure out the mechanics of how neurons become excited. His team then made the leap in postulating that they could translate the electronic impulses into commands to operate a computer or a machine.

    Teaming up with researchers at the University of Utah who had developed advanced neuro-sensor chips, Donoghue implanted electrodes into the brain of a rhesus monkey that had been taught to play computer games with a joystick.

    They hooked up the monkey's chip to a computer that simulated the movements of the joystick, and electrical impulses from the monkey's brain allowed the cursor to move onscreen. Donoghue's 2002 paper in Nature announcing his results was a sensation.

    But the researchers had no idea what the monkey was thinking, or if they could render what was going on in the simian brain in a human. But just as monkeys were first primates in outer space, the rhesus was the forerunner for Matthew Nagle's device.

    The sensor in Nagle's brain is the size of a baby aspirin, with 100 thin, hair-like electrodes on one side. The surgeon drilled a small hole in Nagle's head and implanted the Braingate device above a specific region of the brain between the top of the skull and the ears, long known to control motor activity.

    Donoghue explains that the electrodes pick up on electric signals that spike when a cell is activated by thought -- a "beep, beep, beep, beep" he says, speeding up the beeps to simulate what happens when a brain cell gets excited. "With motor cells, thought drives activity."

    The implant is attached to a computer that translates the beep signals into commands -- to move a cursor, or to open and close an artificial hand.

    Nagle is responding so well, he says, that the software lagging behind his ability to use the device. "It's like riding a bicycle. At first, it's wobbly. He over-steers and that sort of thing. Then he's suddenly riding. Now he's cruising along without thinking too hard. He talks to us while he's on the computer."

    Nagle lives in a chronic-care home. He was already hooked up to his television, which he operates by bopping his head against a device. One bop summons the nurse, two bops turns on the television. So far, he can only mind- meld with his computer when a technician is around. "We're working as fast as we can to automate the software," says Donoghue.

    If Nagle has exceeded Donoghue's expectations, the researcher cautions that this 25-year-old may prove to be an anomaly, although he is performing in a way similar to the monkey. "We need to see if this technology works on more people," he says.

    In 1999, cyber-guru Ray Kurzweil wrote "The Age of Spiritual Machines: When Computers Exceed Human Intelligence." He argued that computers would one day become smarter than humans. Kurzweil predicted the human brain-computer interface link-up would happen in about 2009.

    We're early, although this may indicate that Kurzweil's larger thesis will also come more quickly than he thought -- the eventual fusion of mind and machine.

    Which raises the question of where the human ends and the machine begins    which has become a topic of furious debate in genetics as well as cybernetics.


Saturday, December 04, 2004

Hectic and good

Life has resumed its hectic pace, but things are good. My kids are fantastic, and my wife is a miracle too. There are still household projects to do. We have a new shower rod! That took nearly five years...

I disbanded the ant trail to the kitchen trash by taking the can away, hosing it down in the back yard, and (this is the critical step), placing a different trash can in another location. It was, alas, the costume I had made for my son for Halloween. But if anyone wants to be a trash can again, I have a better design for it in mind. The key thing was to allow the chemical ant trail to degrade, and that there be no reward at the end of it. It worked.

Going shopping. Basically I am tired and happy.

The proof copy of the poetry collection has arrived. And it looks fantastic. But it is clearly not 6" x 9" as I ordered. It's 8.5" x 11." I make mistakes, but I'm pretty sure this isn't one of them. I find out what is going on and let you know.

Thursday, December 02, 2004

Family Effect

While they were gone I was feeling my ALS more prominently, more twitching, gimpy walking, brief cramps when stretching in sleep. A little stumbling. Now that they are back I notice that the twitching has slowed down, and I feel good and whole. The Family Effect? I guess.

It was such a joy to see them. I saw my kids somewhat with new eyes. And they had made developmental leaps while away. My wife says that a change in setting, or change in general, can stimulate kids' development.

There was an enormous moon near the horizon as we walked to our car last night, and my daughter said something very complex about it. I don't remember what she said, but I do remember looking at her and thinking that she was less a toddler and more a two-year-old.

At breakfast this morning my son said something long and complex that involved the phrases "...what I consider to be..." and " in my case...."

Last night he specifically asked that I be the one to put him to bed. And he asked that I do it three nights in a row. My lovely wife and I are going to continue switching off, but I was honored.

I have made an appointment to get my blood drawn and tested for:

  • Cholesterol (HDL, LDL, VLDL)

  • Trigylcerides

  • Lyme factors (IGG, IGM)

  • Bilirubin

  • Serum glucose

No big reason, just curious, and it will be useful information going into my next visit to the ALS clinic, which has 'workshops' where they check all your functions and answer your questions. I am scheduled for Feb. 14, Valentines Day. I checked this with my lovely wife, and she says it's OK.

She asked me to marry her on a sunny Sunday morning, Valentines Day. I watched several movies with Cate Blanchett while the family was away, and when I saw my wife at the airport, she reminded me of Cate's blond characters. She has the same sort of inspirational face. Seeing her with new eyes, I saw her as others must see her. Lovely, that's true, but also sweet. She is the one I know so well, and count on.

By the way, my programmer friend solved the puzzle. The puzzle was super-easy: Can you spot the flaw in this code?

for (int i = 0; i < myArray.length; i++) {
System.out.print(myArray[i] + " ");

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